Hello Everyone,I visit here often for advice and hope. My mom was diagnosed this year with Parkinsonism with LBD by a Neurologist and Neuropsychologist. She was previously diagnosed last year with Alzheimer's. She has lived with my family for 10 years, the last 3 years being the most challenging. She hallucinates around the clock and has delusions that this is not where she lives (not home). She was on Seroquel 25 mg. twice per day, the Neuropsych wanted me to take her off to see her symptoms without it. Her hallucinations stopped for about 2 weeks and then came back, keeping us up at night. Finally the Neurologist wanted her to go back on it and start slow. She is now on 12.5 mg. at night. She has frequent UTI's and had just finished her Keflex about 5 days before and seemed to still have a UTI and it seemed to be completely out of control - she stayed up for 24 hours wandering around the house, forgetting to use the walker, becoming more unsteady with each hour (exhaustion, I assume), paranoid, agitated, etc. Finally, I decided to take her to the ER. They diagnosed the UTI and started an IV with antibiotics. The ER doc wanted to send her home and I told him I had been looking at SNF's for her because she has Medi-cal and can't afford an ALF or Board and Care Home. He admitted her to the hospital but she became combative in the ER knocking the IV out of the nurse's hands so they injected Ativan in her IV. (This behavior is out of character for her - except in the hospital). She had a bad reaction to it - slurring her words, jerking all over her body, lethargic, etc. She has a Medicare Managed Care Insurance (SCAN) so from the ER Case Manager I was told she would most likely qualify for a short-term stay at an SNF (covered by SCAN), then if a Medi-cal bed was available moved to long-term care with Medi-cal or that SCAN will pay for custodial care long-term. I doubted that. So the quest begins, she was admitted and I began hearing from the Case Manager on the floor, trying to get my first choices of SNF's to respond to referrals from the hospital. One Liaison between the SNF and the hospital came to observe her. There are two facilities in the area owned by the company this liaison works for and both declined to accept her on the basis that she didn't meet the medical need for a short therm stay. Then the other SNF's in the area were attempted (4 others who are contracted with SCAN). None of them would take her! The reasons varied from - she doesn't qualify for skilled nursing, no long-term Medi-cal beds available, behavioral problems with dementia. So I began calling the Referral Services who do placement in ALF's and Board and Care Homes. The reason my mother is on Medi-cal is that she has no assets and very low SS income and of course that doesn't pay for either of the latter choices. The cost in our area for these types of options are from $3,500-6,000/mo. This is way above her income level, I am willing to go to work and try to make up the difference but even finding a place who will accept a LBD patient is hard to to do. Several SNF's I visited told me they do not take dementia patients and some had never heard of LBD! I've been told that Board and Care may not be an option because the caregiver sleeps at night (ha, I don't sleep at night!). I am so exhausted from this search it is unbelievable. I brought her home and she requires 24 around the clock care, she can't get out of bed alone, go to the bathroom alone, eat alone, etc. I carry a monitor with me to every room. The hospital is sending a home health nurse, I don't know how long SCAN will cover this. I am going to hire help in the house but it's more to coordinate and one more person in the house. Are there Care Facilities in the San Francisco Bay Area who are experienced with LBD? Affording the care is the problem because Medi-cal does not pay for anything other than SNF which she is not qualifying.I know this is long, thank you for reading.SherryB

Wed Jul 18, 2012 9:19 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Help finding the right long-term care facility

Sherry, I don't live in CA so there's a lot I can't answer but I'm assuming Medi-Cal is California's Medicaid program. Many dementia care facilities do take Medicaid. I would certainly try to get her neurologist and neuropsychiatrist involved in recommending a facility. You may have to widen the radius before finding suitable placement. As far as I know, even in CA, the hospital may not discharge her without placement. You may have to accept a temporary stay in a facility that will take her, that Medi-Cal will pay for, while you continue to search for an optimal facility. Hugs to you!! Hope you get something soon! God bless!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jul 18, 2012 9:54 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Help finding the right long-term care facility

I just wanted to say welcome and I'm so sorry for what you are going through. I'm on the other side of the US so I don't know have any specific info. for you on facilities in CA, but I wish you the best. I think Pat's suggestion is a good one - use a temporary place if need be while you continue your search. Please take care of yourself while you are in the midst of all of this - you don't need your own health compromised. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Jul 18, 2012 9:58 pm

katelu

Joined: Tue Dec 29, 2009 2:28 pmPosts: 464Location: Minnesota

Re: Help finding the right long-term care facility

Sherry,

Start by going to www.medicare.gov, clicking on "facilities and doctors" and then on the nursing home tab. This will give you some good information to start with. You identify your location (city or zip) and the page will come up with what should be most of the licensed SNFs in your area. Each facility is graded by inspections that take place once or twice a year and by reported issues. The site also lists what kind of payment they will take (private, VA, Medicare or Medicaid). Being in Minnesota, I have no knowledge of Medi-cal. Is it the California name for Medicaid? Or is it something separate, which may mean Medicaid would still be there.

Tour the most promising facilities. Be sure to talk a bit with the staff and any families you can. Remember that the prettiest is not always the best. You may need to get on a waiting list, but a hospital social worker can pull some strings if it is obvious that the patient needs admission right away. Also, the SNF should have a social worker on staff who can advise you on finding ways to meet the cost. If it is a matter of her savings, there could be things you can do. One thing I did was to put money into a funeral pre-paid account. This money is not counted as an asset because it is no longer available to your mom, but it will be there to pay for final expenses. (Mom's very simple cremation, memorial and burial of her ashes cost us around $10,000.) Remember to talk frankly and openly with the SNF and hospital social worker. They are there to help, but need a full picture of the situation.

Don't give up on placement. If govt assistance is really a no, check out community or religious organizations for help. All anyone can say is "no."

Kate

_________________Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Thu Jul 19, 2012 9:53 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Help finding the right long-term care facility

Here's a web site I found very helpful: http://www.snapforseniors.com/ It includes assisted living facilities and adult family homes as well as skilled nursing facilities.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Jul 19, 2012 10:41 am

empritchard

Joined: Mon Feb 14, 2011 10:22 pmPosts: 191Location: Portland, Or

Re: Help finding the right long-term care facility

If your mother is on Medicaid she should have a caseworker. If so, contact the caseworker or your local office of Seniors and Disabilities and they should be able to help you. If she doesn't meet the criteria for a SNF, she should be able to get help paying for in-home caregivers. Good luck,Ellen

One thing I forgot to mention is that Mom did "showtime" for any decision makers in the early days. So, doctors, social workers, therapists, et al didn't see her needs as clearly as I did and she wasn't considered someone who needed all that much help - until one of her falls ended up in two broken shoulders and she wasn't found until her couple-hours-a-day-couple-of-days-a-week aide got there.

It's too late for me now, but you might want to keep a journal of things she needs help with - listing everything and each time and what you did for help and what would have made things better. You might even use your phone, a camcorder or even snapshots for illustrations of her non-showtime needs and behaviors. You need to be able to show what she is like at her worst, not at her best.

Sometimes you have to prove how bad things are in order to get help.

Kate

_________________Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Thu Jul 19, 2012 11:19 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Help finding the right long-term care facility

Kate, What a great idea about using your cell phone to show what's going on when our lo's do so much show time when they are with doctors ! I am sure I will be using that idea when I talk to others on how to get the professionals to see what we often see ! Thank you!

_________________Irene Selak

Thu Jul 19, 2012 4:40 pm

bethersmi

Joined: Thu May 31, 2012 6:51 pmPosts: 60

Re: Help finding the right long-term care facility

Sherry:

I don't know if this will help, but you might try looking in the counties and communities surrounding San Francisco, such as Contra Costa County, San Jose, Santa Clara, or even some of the communities surrounding the Sacramento area.

My ex-husband had his mother in a SNF in Sacramento and he told me once how many hoops he had to jump through to keep her there. From what I hear, Medi-Cal is tough to get and keep. So I wish you luck in your endeavors. I definitely think you need help from a social worker to help you through this difficult time with your mother. Also, try calling your local Council on Aging to see if they can help you. I did that a couple of days ago and felt much better afterwards.

I think it's such a shame how elderly people are treated in this country.

_________________Beth

Mon Jul 23, 2012 1:59 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Help finding the right long-term care facility

Quote:

I definitely think you need help from a social worker to help you through this difficult time with your mother. Also, try calling your local Council on Aging to see if they can help you.

Both good ideas.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Jul 23, 2012 10:37 am

katelu

Joined: Tue Dec 29, 2009 2:28 pmPosts: 464Location: Minnesota

Re: Help finding the right long-term care facility

bethersmi wrote:

I think it's such a shame how elderly people are treated in this country.

Amen.

Kate

_________________Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

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